I was diagnosed in 2015 with stage 3C colon cancer through a routine colonoscopy. Due to years of ulcerative colitis I had to have a total colectomy (temporary ileostomy) 12 rounds of Folfox, and then a reversal of the ileostomy (J-Pouch Surgery). Between the chemo and the ileostomy I became severely depressed but always determined to fight this demon and keep moving forward.
With the most supportive husband, my grown children and my closest friends (this was “my Village”) there was never a doubt that I wouldn’t beat this regardless of the odds! I went into remission for 1 year and then my CEA started rising. It turned out that the cancer metastasized to the lymph nodes above my clavicle and throughout my pelvis. My oncologist at the time told me that I had to start chemo again and that I would be on it for life. No way, not me. Enough Chemo! This body couldn’t take it anymore.
I am also a triple negative breast cancer survivor. I have been in remission for 15 years. I underwent adjunct chemo before and after surgery, my weight plummeted to 83 pounds and I went through three failed breast reconstuctions. I finally had a Doris-flap with implants after I switched doors and institutions. It was soon after that I was diagnosed with the colon cancer.
So when my first colorectal oncologist told me that chemo was forever I simply said NO WAY. I went home and researched with my family and our research led us to Johns Hopkins and to a Dr. Dung Le. So we had to get records sent to Hopkins and when I asked my oncologist here in Philly what were my biomarkers she had no idea nor did she know about my DNA sequencing. Are you kidding me?!? So the biopsy was ordered and the specimen was sent to Dr. Le and I got a call to say that she was conducting a clinical trial. So we scheduled the appointment packed our things and went to Hopkins.
I was told that I was MSI-High and that I qualified to take part in her trial! But I had to wait until my cancer grew. The cancer was too small to treat and I thought "Wow, I have to wait again for it to grow and spread to other parts of my body!" So I waited... totally terrified but I waited. I waited because I met a man on two support groups that was a colon cancer patient, a scientist/researcher with lots of experience: Tom Marsilje! I DM'd him and he immediately responded telling explaining to me that Dr. Le was one of the most respected oncologists out there and if she said to wait, then wait! Tom also advised me to join Colontown, a support group run by patients and top scientists/researchers and that I would learn about my options and about my disease. He was right! I learned so much from this group and most importantly they taught me how to be my own best advocate.
Finally a year later, the cancer started growing and Dr. Le started me on Keytruda. Fortunately, by this time 2017 it became FDA approved for cancers that had biomarkers that were MSI-High. So we traveled back and forth from Philly to Baltimore every three weeks. It was after my fourth infusion that I started experiencing adverse reactions: rashes, extreme fatigue, asthma, severe cough, sinusitis and then the worst... an allergic reaction to an antibiotic that sent me to the ICU, running a fever of 105.1. My blood pressure was through the roof. I spent three days in the ICU where I developed MRSA. UGH ... what else could go wrong. I remember NOTHING about my hospital stay except I heard the doctors talking and one of them said, “She’s not going to make it!”
Well, they had no idea who they were dealing with. I was 61 years old and damn if I wasn’t going to beat this! So, finally I was sent home and I spoke to Dr. Le and she told me that my CEA markers were almost nonexistent. They went from 24 to 2.4. 💃💃💃
Summary: I stopped Keytruda in December of 2017 after only four infusions. My scans showing shrinkage and necrotic tissue... no growth! As of today, in 2019, I am still stable and Dr. Le doesn’t want to see me for 6 months! Patients need to know that clinical trials save lives. Get that second opinion. Never, never let a doctor give you an expiration date. And never lose HOPE!